I was sitting around a conference table at The University of Washington Autism Center with my wife Jen and two therapists discussing what we should do—how they wanted to give him drugs and we didn’t want to—and the conversation was building toward an argument when it occurred to me that we weren’t talking about drugs, or Autism, or even Sawyer, we were talking about what it meant to be human. In fact, it occurred to me that whenever we talked about these kids we were talking about what it meant to be human. Are these children, some of whom can’t walk or talk, less human than we are? It sounds like an absurd question, I know, and yet we often treat them as such, as if they have arrived and are some weird and special version of human, and so we give them special education, and say that they have special needs. All of this is done with gentleness, and yet hovering over all this gentleness is the quiet thought that maybe their specialness means they are a little less than those of us who are not labeled special. As the parent, you know within you this isn’t so. You held them in your arms as you would have any infant, and you perceived with a parents’ eyes their perfection, their total humanness. And so, if these children that we call autistic are as human as those of us we do not call autistic, that means that everything we think about them, we think about ourselves. That is the real, moment-to-moment challenge for most parents. What we think about them we are simultaneously thinking about ourselves. For instance, how tempting to begin to see these children and their behavior as one-in-the-same. After all, parents and teachers and therapists and doctors are always focused on the child’s behavior. Why are they doing this, and why aren’t they doing that? If only they would behave normally maybe I could sleep at night, maybe I could look in the mirror and know that I am seeing a good mother or father. But do you want to be seen as one-in-the same with your behavior? Think of the partners you slept with that you didn’t love but only desired; think of the drugs you may have taken; think of the lies you have told; think of the unfair criticisms you’ve leveled at loved ones and strangers. Were any of these behaviors you or merely a reflection of your perception at a given moment? Had you not done the best you could given what you understood and perceived, and had you not learned from those experiences so that your behavior could change the next time? The world of judgment lives in behavior. Our behaviors are measured in tests, are put on trial in the courtroom. Yet despite all success and failure, all guilt and innocence, their beats within us that which cannot be measured or compared, which is never guilty and never broken. That is you, a perfect thing in search of its own perfect expression. I welcome feedback and questions. Feel free to post any comments or questions below, or contact me directly.
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Anat Baniel has been working with children with severe physical challenges for nearly 30 years. She has an impressive resume, but it was when she told me, “Autism isn’t behavioral, it’s perceptual,” that I first thought that I’d like to work with her. The essays in this space are going to deal almost entirely with perception. That is, I will not be offering any therapeutic suggestions for anyone caring for a child on The Spectrum. There are so many things we can do to help our children, regardless of their needs. I don’t know you, or your child, but I do know that how we see the world determines what we will do to help our children and ourselves. For instance, if we believe there are broken people in the world, we might try to fix our child. If we do not believe there are broken people in the world, we will not try fix our child because you cannot fix what isn’t broken. When we talk about autism we are always talking about behavior. Though it is discussed like a disease, there is no virus for white blood cells to attack, no tumor to be removed. There are only behaviors that are not what we would call normal. When my son Sawyer was younger he retreated into an imaginary world where he would run back and forth and hum and flap and talk to himself. He did this at home and he did it at school. That was his behavior, and we wanted it to stop. It is tempting to view his behavior as somehow very different than, say, my behavior. It looks aberrant, therefore it must derive from something aberrant. Yet what is behavior but a reflection of perception? If I perceive a dragon standing in the middle of my street, I will behave as if there is a dragon standing in the middle of my street regardless of whether there is one or not. You could try to teach me to behave as if there isn’t a dragon, you could give me medication so I wouldn’t behave as if there is a dragon, but as long as I see a dragon I will continue to behave accordingly. I would be crazy not to. I’ve seen a lot of dragons in my life. I’ve seen them in failure and I’ve seen them in victory. I’ve seen them in my children and in my wife and in my friends and certainly in those people I have called my enemies. When I saw dragons I behaved accordingly. I accused people of crimes I believed they had committed; I readied my sword for attacks that would never come; I complained about the world and its unfairness, for all these dragons didn’t care one wit for my wellbeing. For a time, I believed it was my job to slay all these dragons. I would slay them with success, or with a good argument, or with my virtue. Yet the dragons kept appearing. By and by I decided that instead of trying to slay them I would learn to see through them. After all, I was only drawing my sword so that I could live in a world without dragons. What if I already did? Shouldn’t I find out if I already lived in the world I was trying so hard to create? So what does this have to do with autism? We want our children to be normal. That is, we want them to be capable of creating a meaningful life. What if, despite their behavior, they already are normal? What if they already possess the very same tools you and I possess that guide us through our life and toward our meaning? The first thing Jen, my wife, and I did with Sawyer was stop telling him he was wrong to pretend and hum and flap. Maybe all that humming and flapping was a response to a perception of the world. Maybe he was seeing some kind of dragon. Instead of getting him to stop humming and flapping, we wanted him to start seeing a world without dragons. And the very best way to do that was to stop seeing them ourselves. This is what we are going to do here. I think everyone in the world believes in dragons. In this way, we are all autistic. It takes practice to see a world without dragons. Consider this space part of our practice. Every time we choose to see the world and our children and ourselves as correct instead of incorrect we practice seeing a world without dragons, a world where no one is broken. I welcome feedback and questions. Feel free to post any comments or questions below, or contact me directly. |
William Kenower
I am the author of Fearless Writing: How to Create Boldly and Write with Confidence, and Write Within Yourself: An Author's Companion. Learn more here. Archives
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